Going to college is a rite of passage for many young adults. If this is you, it might be the first time you’re fully responsible for yourself without direct input from parents or other family members.
There is a lot to manage as a student — class and work schedules, schoolwork, money matters, finding the best dining halls, making new friends, and the list goes on. On top of these responsibilities, young adults with bleeding disorders must manage their condition on their own, perhaps for the first time.
“Navigating college with hemophilia presents unique challenges, but with the right support, you can thrive academically and socially. As you prepare for this new chapter, it’s important to understand what assistance colleges can provide and what resources are available to help you succeed,” writes Michael Viscariello, LCSW, a social worker at the Hemostasis and Thrombosis Center at Children’s Hospital Los Angeles, in HemAware’s “Ask a Social Worker” blog.
Here are four tips for self-care — and self-advocacy — at college.
Meet with your school’s service centers.
Before school starts, meet with support services at your college. The office of disability services, for example, can assist you with storing medication, treating in your room, special transportation, and academic assistance.
The student health center can help you figure out how to have medication shipped to you and how to store it.
Talk to the mail center so the staff know to alert you whenever a medication shipment arrives and to refrigerate it if necessary. Also, schedule deliveries of your medications so you don’t run out.
If you need accommodations because of your condition, such as needing extra time to get to class due to mobility issues, you may need an Accessibility & Accommodation Plan. Start the application process early — it can take six to eight weeks to finalize, and you want the supports in place when school starts. To guide you, NBDF has this resource document.
Decide whom to tell about your bleeding disorder.
It’s a personal decision whether to disclose your bleeding disorder. Still, it may be beneficial to have certain people know about your condition. Some students choose to tell the school administration, professors, friends, roommates, and — if they live in a dorm — their resident advisor (RA).
In an emergency, someone who knows about your bleeding disorder can help you get to medical care, get your medication for you, or tell people about your condition if you can’t speak for yourself.
Professors will need to know about your condition if you have an accommodation plan — and even without a plan, it can be helpful for them to know if you miss class for health reasons. “Many professors are willing to accommodate students with medical conditions by offering extended deadlines or alternative exam arrangements when possible and as needed,” Viscariello writes.
Refer to these tips for engaging school faculty and staff.
Be smart about your activities.
You’ll have lots of opportunities to be active in college, whether it’s as part of an organized intramural sport, a spur-of-the-moment game in the greenbelt, or evening antics in the dorm hallways.
Although your parents might have advised you on what was safe to do back home, you’ll have to make these kinds of calls on your own.
“You will be in charge of deciding whether these are things you can be a part of in a safe way, choosing based on what’s best for your body,” Ashley Parmerlee, a medical social worker at the Indiana Hemophilia & Thrombosis Center in Indianapolis, tells HemAware.
Check out this grid for the risk levels of participating in more than 75 sports and activities.
If you’ll be working while at college, be mindful of the physical demands. Strenuous jobs, such as delivering packages or stocking shelves, can be problematic for people with joint disease or joint bleeds.
Whatever you do, Viscariello recommends carrying a medical alert card or bracelet that has important details about your condition and contact information in case of emergency.
Connect with your hemophilia treatment center.
Before you leave home, reach out to your HTC, Viscariello explains. “Be sure to discuss your plan to attend college with your hemophilia treatment center (HTC) social worker,” he writes. “They can serve as an invaluable resource to guide you with this process and help advocate for you as needed.”
If an HTC is near your college, it can be a resource while you’re in school, although many HTCs recommend keeping your home-base HTC as your primary treatment center until you transition to adult care after graduation.